Adults with disabilities poised to win more housing options

Stanley Ligas, 43, who has Down syndrome, sits in his bedroom at Sheltered Village in Woodstock.

Stanley Ligas, 43, who has Down syndrome, sits in his bedroom at Sheltered Village in Woodstock. (Keri Wiginton/Chicago Tribune)

Lisa Black, Tribune reporter

Thousands of Illinois adults with developmental disabilities — many of whom have spent years on a 21,000-plus waiting list for state services — will soon have more choices in housing under a proposed settlement to a long-running federal lawsuit.

The settlement, if approved as expected Wednesday by U.S. District Judge James Holderman, would upend how the state now pays for their care. Rather than assigning dollars to institutions, the money would follow the individual to the housing of their choice. The goal is to bring Illinois into compliance with the 1990 federal Americans with Disabilities Act, which requires that people with disabilities be allowed to live in the "most integrated setting" within their communities.

The case could mark a significant — and potentially costly — turnaround for Illinois, which has lagged nationally in its attempts to move people out of larger institutional settings and into apartments or homes closer to their families. Under a consent decree supported by both sides in the civil lawsuit, the state would move at least 3,000 people into community-based settings within the next six years, expanding opportunities for those at home or in institutions, according to the court document.

"We view this as a civil rights case in the truest sense of the word," said John Grossbart, a Chicago lawyer representing five plaintiffs in the lawsuit against the Illinois Department of Human Services. He noted that Illinois ranks second to last nationally, just above Mississippi, in serving people with developmental disabilities in community-based settings, according to the State of the States in Developmental Disabilities 2011 report by the University of Colorado.

While many advocates remain concerned over how debt-ridden Illinois will find the money to meet the new legal requirements, most support the settlement because it would not force anyone to move. That was not the case two years ago, when families balked at a prior proposal that some believed would jeopardize their relatives' placement at a larger facility, which they preferred.

"This agreement really respects choice," said Barry Taylor, a lawyer for Equip for Equality, based in Chicago. "Before this lawsuit, thousands of people who wanted to live in the community couldn't do so."

Children with disabilities get special education services until they reach age 22, as required by federal law. But the state has been slow to help cover the needs of adults, who often find little use for their education without jobs, housing or services.

Because of limited funding, many adults with the most severedevelopmental or intellectual disabilities are placed in state-funded institutions or remain at home with their parents, who worry over what will happen after they die. The state, which allocates Medicaid money, has helped only those in extreme crisis, leaving others on the waiting list for services.

One woman, Diane Neese, of Bradley, Ill., who supports the consent decree, stated that when her son Ryan, 21, graduated from high school in 2009, "his daily scheduled life stopped."

"A state caseworker advised me to 'throw him out on the street and he will receive services immediately,'" she wrote. "Why would I throw my autistic child out on the street like a piece of garbage?"

State officials declined to comment. Besides DHS, the suit names the Illinois Department of Healthcare and Family Services as a defendant.

It is difficult to estimate how much it will cost Illinois to meet the new requirements, but historically, Illinois has faced strong resistance from labor unions and families to closing state-run institutions.

In 2009, the state spent $1.7 billion on long-term residential care for 23,730 people with developmental disabilities, according to the State of the States report. About $419 million of that amount went toward serving 2,308 residents at state-operated institutions, only eight of which remain after the closing of Howe Developmental Center in Tinley Park last year.

To cover the costs associated with the consent decree, Illinois will have to "either reallocate money that is going to state-operated developmental centers or come up with new funding for community support services," said Mary Kay Rizzolo, clinical associate professor at the University of Illinois at Chicago and co-author of the State of the States report.

"I don't see us getting new dollars, so we will have to be more efficient with the dollars we do have," she said.

The Arc of Illinois estimates that it costs on average $55,000 per year for a group home setting, compared with $192,000 annually at a state-run institution.

Per-person costs vary widely by individual, though, and critics remain skeptical that community settings would stay that inexpensive if serving people with more severe disabilities.

The landmark case, filed by Stanley Ligas and eight other plaintiffs in 2005, alleged that the state unnecessarily segregated them by placing them in institutions. Some plaintiffs dropped out because their personal situations changed. Five plaintiffs, including Ligas, remain.

Under the proposed settlement, officials would move at least 1,000 people off the waiting list within two years, serving an additional 500 people annually during the third, fourth, fifth and sixth years under the settlement.

"I see it as the beginning of the courts taking over the disability system because the governor and legislators have not done their part to provide viable community services," said Tony Paulauski, executive director of Arc of Illinois, based in Frankfort.

"If there are problems in terms of funding or people moving out of institutions, the court will intervene," he said.

The court also would appoint an independent monitor to oversee the state's compliance.

Advocates are excited because the settlement would force the state to provide funding to its most vulnerable population. Yet some still worry about whether funding will simply shift from institutional care to group homes.

Carl La Mell, president of Clearbrook, one of the state's largest nonprofit providers of housing for people with developmental disabilities, supports the latest consent decree. "I think it's the right thing to do for people," he said.

But La Mell was among those who objected to the earlier attempt at a settlement.

Arlington Heights-based Clearbrook operates a 92-bed facility, three homes for up to 16 residents and 29 group homes that house eight or fewer people.

"Are they going to fund it by taking existing dollars that go to people or are they going to take money from someone else?" La Mell asked. "That is what scares me."